One of the main aspects of having a Special Needs Ministry is working with the parents. They are the ones who need someone to listen to them, someone to understand, and someone to turn to when there seems to be no one left. I love building relationships with the parents and find that they are the ones who move the ministry in the direction it needs to be going.
I had lunch with a mom of a special needs child yesterday. Something she said has resonated with me for 24 hours and has given me more insight into the world of special needs than anything else. She started off by saying, "Parents of special needs children are going through the grieving process." I thought, I know that. I've heard that for years. It wasn't until she continued with her thought that I thought, wow, now THAT'S it. She continued to say that they start grieving when their child is diagnosed and might go through the set steps to grief but they don't stop there. Each time there is an event in which their child's disability is brought to light again, they start fresh with grieving. She was so true. Let me expand on it a little.
I have a typical child. He mastered his first word at 9 months and we were thrilled. He started walking at 16 months, again we were thrilled and probably blogged all about it. This past December, he performed in his first class program up on stage. Tears of joy streamed down my cheeks as he stood up there dressed like a donkey singing about Jesus. I can't wait for him to start Kindergarten in a year, play his first t-ball game, and even have his first little crush. All of these things make my eyes light up.
Now I have many friends (parents of my special needs kids whom I call friends) who have special needs children. In talking with them, I've heard the heartache associated with simple milestones. They experience the first day of school in a different way. It might not be a joyous event. It might be hard knowing what their child is going to have to go through. They hear of the school program coming up and grimace because they know their child will probably not want to be anywhere near the other kids on the stage. If they do choose to be on the stage, they might not be singing like the other kids. To think of the events to come, they have a sense of loss. The dreams of watching their son be the star pitcher of the baseball team or their daughter being Homecoming Queen might not ever come to be. This is grief revisited. Grieving the dreams, the simple milestones, and the expectations. The amazing turn is that many of the families I know eventually find a way to look at the expectations and milestones though different lenses. They make a deliberate choice to focus on what their child can do and how much they have accomplished. While it's not always easy, that is what they have to do and they do it.
How blessed are we to work with such strong parents? I'm blessed beyond measure. Each day I only hope that I can gain a little more insight into their world. I don't ever want to pretend I know what they're going through because I probably never will. I do, however, want to become more in tune to what they're dealing with, in order to help me minister to them in a more effective way.
Subscribe to:
Post Comments (Atom)
What an interesting view. It makes so much sense once I stop and think it through. God help us all to see these beautiful children and adults through His eyes.
ReplyDeleteHumanity is geared to the norm. What is a nearly automatic accomplishment in typical children is often a drawn-out, exhausting, sometimes frustrating process for kids with special needs.
ReplyDeleteSome of that is helped by understanding learning styles, and some targeted physical therapy, speech therapy, etc can similarly help greatly, and attitude and expectations must constantly be examined and adjusted, but at the end of the day, developmental delay is developmental delay, and there's no way around it. Your child has to go through it.